Imperfect Perfection

Those that know me know that I don’t often think twice about my life in terms of being disabled, I dislike even that classification. I live life everyday just as everyone else does, the only time I may even think about the fact that I use a chair is when I search for accessible parking spots or have trouble reading the card readers at the checkout counters in stores because a lot of time they are bolted at a level just above my head so as to make the text on the screen look like shadows.

Today I found myself thinking about my physical lifestyle in a powerful moment of reflection which has driven me to write this entry, but I will detail that later.

For those that don’t know I was born November 7, 1982 in Minneapolis Minnesota weighing a mere 2lbs. 6 oz, I was a tiny premie greeting the world three months early I was to have been born January 22, 1983 had I gone full term. My parents and family were by my side from that first night, the doctors said I may not live to make a trip home outside the four hospital walls, and even if I did then I may have brain damage to the point of needing round the clock care. My family knew better looking at those doctors saying I would not die, and no matter how long it took I would come home.

My family was right it took several months but I made that trip home, I had survived what came two years later would shape the foundation for the rest of my life, at age two I wasn’t walking like my brothers had so my parents knew something wasn’t right. I was taken to specialists who through a series of test were able to determine I wasn’t walking because I had Cerebral Palsy (CP), a neurological condition brought on my premature birth and a brain hemorrhage I suffered a week after my birth.

CP would not define me if my parents had anything to say about it, they immediately got me working with a private physical therapist named Nancy who would see me twice a week from then at age two until I would move for Minnesota to California at age twelve. It didn’t stop with Nancy though my parents continued therapy techniques on her off days, as did the most amazing baby sitter ever a woman who treated me like her own son and still does to this day, never forgetting a birthday amongst so many other things still to this day…..Connie hung different material samples from her ceiling in my early years so I could get past my tactile motor sensitivities, who transforms their house for a child that doesn’t have her last name? An incredible lady who I will love forever 🙂

I would walk with a walker for ten years in Minnesota along with the use of AFO leg braces thanks to all of the therapy, that would change when my parents moved me to Santa Barbara California in the summer of 1995 due to my Dad getting a job transfer I went to a wheelchair sports camp and my parents saw that my function in a chair was vastly improved of that when I walked from a stamina & independence standpoint. From 1995 to 2013 I would be in different size but always the same style Quickie basic measure standard stock aluminum lightweight chair.

Independent nearly every day for those 18 years, sands a three month recovery post surgery my sophomore year of high school the daily basic functions of life became second nature and my chair was only a tool I used to aide me, never truly thought about on its own.

This is why I write tonight, after 18 years in a Quickie stock lightweight chair, last week I went into a TiLite Ultra lightweight Titanium chair with a full custom fit seat and backrest by Ride Designs, though great 18 years of familiarity were gone with my Quickie chair. Where I would hold for transfers, where I would grip for lifts into my car, all of that gone.

I had to reinvent my life routines last week, and it was extremely scary, each transfer in and out of my new chair brought fear of falling, I got through last week but things took me just that much longer…..until today…….that is why I write tonight. I went into the bathroom today after a haircut to take a shower and there was no fear there were no pauses in my movement. I cannot stand any longer like I did when I was 12 because of a hip problem and nerve damage in my left foot, I’m 30 years old and the only letters I can write in cursive script are those of my name in order to sign checks because that is what my parents wanted me to learn, and nothing more….but I realized tonight God has truly blessed me with physically imperfect perfection, I have all of the essential life skills to function and live with full independence when those doctors all said it wouldn’t be so thirty years ago.

The ability for my body to adapt to my new chair so seamlessly is an amazing gift, I was consciously aware of everything last week and today I didn’t give the potential of falling and the unfamiliarity with my new equipment a second thought until I was done and entirely dressed. That is why I write tonight, in 24 days I will once again call Minnesota home, that will mean relearning transfer layouts in a new apartment, there will be the same few days of caution but today I was shown that in creating me God made me physically imperfectly perfect, there is no physical obstacle I have in my life for which I don’t have the tools to adapt and overcome. I know tonight that I will now be able to harness all the benefits of this new chair and the reasons for which I went into this full custom direction.

When I wake up at to greet tomorrow’s dawn I know that once again my disability will be in the the background as a non thought and Brandon the man will be in the foreground and I wouldn’t want it any other way, I’m so blessed, so thankful & so very happy 🙂